Can you believe it?!?! Sophie is currently NOT taking any anti-epileptic drugs!!! We have weaned her off Clobazam. It has been almost two and a half years since Sophie has been drug-free!!! We still have her vitamin regimen (multi-vitamin, omegas, pyriodxal 5' phosphate and melatonin). She has had a few bad nights and a few bad mornings due to withdrawal seizures but is almost back on track to her pre-wean days. Clobazam is a benzo and a very addictive drug so it is normal to have withdrawal seizures while weaning it. But we are done. WOOHOO!!!
But I feel lost. Where do we go from here? Sophie's seizure freedom (short of a miracle) is hinging on brain surgery. BRAIN SURGERY. Something we will most likely know in less than two weeks. We leave for Detroit in 7 days. I am scared. Scared out of my mind. Sick to my stomach. It is so emotional. If I knew she was a surgical candidate, maybe I would feel more at peace. But her case is not that clear. Right now it is only a possibility. UGH!!! If not brain surgery, then what??? Where do we go from here. I am trying not to think about it. But I have to. Once you have tried all front line treatments and FAILED, then your mind has to go there. You are constantly thinking what next. You don't have the luxury to fail a treatment and then start thinking about the next option. Precious moments would waste away when you could be trying something different to stop the seizures. Sophie is having seizures EVERY SINGLE DAY.
It's crazy. Two years ago when we had our first visit with Dr. Chugani, I had mixed feelings about brain surgery. I couldn't imagine Sophie having to go through that. I didn't even know that if she turned out to be a surgical candidate that I wanted to go there. Once you take away part of your brain, you are never getting it back. There are no brain transplants.
I just want to curl up in a ball and blink away these next 2 weeks. Wave my magic wand and have all the answers before me. Of course, all the right answers.
But I feel lost. Where do we go from here? Sophie's seizure freedom (short of a miracle) is hinging on brain surgery. BRAIN SURGERY. Something we will most likely know in less than two weeks. We leave for Detroit in 7 days. I am scared. Scared out of my mind. Sick to my stomach. It is so emotional. If I knew she was a surgical candidate, maybe I would feel more at peace. But her case is not that clear. Right now it is only a possibility. UGH!!! If not brain surgery, then what??? Where do we go from here. I am trying not to think about it. But I have to. Once you have tried all front line treatments and FAILED, then your mind has to go there. You are constantly thinking what next. You don't have the luxury to fail a treatment and then start thinking about the next option. Precious moments would waste away when you could be trying something different to stop the seizures. Sophie is having seizures EVERY SINGLE DAY.
It's crazy. Two years ago when we had our first visit with Dr. Chugani, I had mixed feelings about brain surgery. I couldn't imagine Sophie having to go through that. I didn't even know that if she turned out to be a surgical candidate that I wanted to go there. Once you take away part of your brain, you are never getting it back. There are no brain transplants.
I just want to curl up in a ball and blink away these next 2 weeks. Wave my magic wand and have all the answers before me. Of course, all the right answers.
8 comments:
Woo Hoo!!! Congrats on the removal of AEDs, Even if it's temporary until the "right course" can be charted.
The fear of the unknown is the worst part of the journey.The need to know and control.Sometimes that is where faith has to come into play,where we sort out what is ours to control and what is not.You,as Sophie's mom,are doing everything you possibly can.The rest,well, that's the tough part.Two weeks,with a busy family,will go fast.I wish you peace during the wait,the awful limbo and pray that answers,yes the right one's, will be waiting for you and most importantly,Sophie.
I'm hoping & praying with all my might that you get answers these next few weeks! And that you have the courage to face them...which (duh) I know you already do! We always find it somehow...
Love & hugs from chilly here...to there...
...danielle
Goodluck my prayers are with you. Detroit is the best place, my daughter had a hemispherectomy with Dr. Sood in March, she is off all medication and doing great! Link to her blog... www.madeleinegracehamm07.blogspot.com
God Bless!
Hi Elaine...I have thought every single thing you said in your blog with our process as well. Jackson was not a clear cut case either. The waiting is the worse part! I'll email you, because it's too much to write here. You all will be in good hands in Detroit. meghan
Thankyou for the email. It is a huge step...surgery.I knew in my heart that it was our last resort and I would do it all over again if I had to.It isn't easy to get through, but in all honesty, it wasn't as bad as I had initally thought. You are in good hands in Detroit. I will keep you and family in my prayers.I hope this trip will give you the answers you need to get off what seems like a never ending rollercoaster. God Bless
Good luck in Detroit. I will keep Sophie (and her doctors) in my prayers. She certainly deserves relief from these relentless seizures!
Tera
Ahhhh...no AED's!! We had 2 GREAT months off AED's...and it really was great. I'm so glad for Sophie to have a much needed break!
Good luck in Detroit....we;ll be praying for you guys!
Rebecca & Ava
Post a Comment